We must flood into the organisations. What percentage of people with ME/CFS are members of an organisation now? 5%? Imagine what power we would have if that was 80%.

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Hi eric_s, I agree, it is definitely a numbers game. However, I think the entire way we are treated dis-empowers and demoralizes most of us. We need to find a way to reach out to every patient, and empower them. Bye, Alex

You know I'm staggered by how rude and aggressive some of you are. I'm not a troll and I'm not baiting anyone. Because I work in another field (molecular cell biology) I'm wary of commenting on a field I'm not expert in (retrovirology). I came here to get an understanding from this perspective after reading some science blogs and information on other forums. It hasn't been a very edifying experience.

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I have a question for you: based on what you have read here, are you interested in researching the causes and cures of ME/CFS? It's a serious question, because the more scientists choose to research ME/CFS, the more research will get done. They will write up more grant requests, their students will get focused on it, their papers will get published, and so on.

People worry about the impact of this on WPI (which I think is a good question), but I'm even more worried about the impact on future researchers. I think students and post-docs are going to read the comments in TWIV, in Science, and maybe even here or mecfsformus, and they are going to choose some other disease to research.

Note: I'm not THAT Levy. My first name is not Jay. I'm not a doctor. I don't research CFS or XMRV myself.

But Joshua, i think we should be fair and see that this was not an ordinary day and RedRuth made some rather provocative comments.

Let's imagine it's the day of the world cup final in football, England vs Germany, and England has just lost because of some questionable decisions by the refree and the refree is known to really dislike England. (The positive studies are not yet disproven of course, there's a difference)

What do you think will happen if you go into a bar where the English fans hang out, after the game, and say things like: Has it occurred to you that the English just simply don't know how to play?

We are human and have a high stake in this. People should be free to think and say what they like, but in such a sensitive moment one might need to be a bit careful.

Hi, Bob, thanks for the reply. I only have an academic interest - my sister thought she had CFS and asked me to look into the XMRV story for her as I'm a scientist. I have to say that I'm pretty taken aback by some of the comments here about scientists, it's pretty shocking really. I'm entirely agnostic about XMRV though I have to say from what I've read, it seems unlikely that it's the cause of CFS.

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I've been asked by the moderator to edit my post. Sorry if I offended anybody.

If you are in doubt of some conspriracy going on around so called "CFS research", you may want to watch this video as a starting point. Or read the "dear sir letter" on the Oslers web. website.

Dear sir letter:

The letter below was displayed on a bulletin board during the late 1980s in the corridor of the division at the Centers for Disease Control that has been responsible for investigating "chronic fatigue syndrome" for the last twenty-five years. It was written by an anonymous CDC scientist. Larry Schonberger, the government epidemiologist who supervised the agency's Lake Tahoe investigation from his office in Atlanta, took it down--reluctantly--after one of his colleagues observed me copying its contents into my notebook. "This will come back to haunt us," the staffer told Schonberger. The actual letter came to me via the Freedom of Information Act.

Hi eric_s, I agree, it is definitely a numbers game. However, I think the entire way we are treated dis-empowers and demoralizes most of us. We need to find a way to reach out to every patient, and empower them. Bye, Alex

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Hi Alex. Thanks for the input. Could you explain a bit more what you mean? I see it's a problem to reach people. Once they are members of an association, for example, they can easily be reached. But before that, if they're not reading forums, it might be more difficult. Especially if you live in a country where doctors are not knowledgeable or have strange ideas about ME/CFS. It certainly can be done though, nevertheless.

Eric_s: I think your discussion might explain about 10% of what RedRuth said, but the other 90% is still out there.

And I think your comparison with football team illustrates the exact problem. In football, all teams are the same. You root for one, but it is really no different than another. Claiming Milan AC is better than Chelsea is being a fan. But science should be completely different. Science should be based on who is right; who has the stronger data. The fact that you would even compare a scientific controversy to a football team shows the problem.

That thread is sort of a basic test of people's attitudes. The paper had not come out, so people knew nothing about it -- nothing at all -- except that it was negative. Look at what people said and how they said it.

You mark my words: No scientist, who is not already studying ME/CFS, will start studying ME/CFS, after reading a thread like that.
It is a bright sign that the people who participate in that forum are anti-science. That they hate the basic idea of trying to figure out what is going on by studying something. That the ME/CFS community wants "science" that supports them, and the truth doesn't matter one wit. In that thread there is not the slightest consideration for what is true or not, for what the data supports or doesn't support.

Note: I'm not THAT Levy. My first name is not Jay. I'm not a doctor. I don't research CFS or XMRV myself.

But the fighting was still going on (and this was in response to Joshua "not Jay"'s posting). See his comment about patients being "anti science". What he refers to is nothing compared to how some patients reacted to HIV doctors.

Wonder no more! Simply go back to Sept 2009 and look at the progression of XMRV.

Or if you are really brave - go back 20 years plus, to 1988 and consider the 3,000 plus pieces of existing research in CFS.

That should give you some clues on what is likely to come of it.

Sorry, not a happy post. With recent developments, Coffin, Levy, Science requests for voluntary retraction, CDC/NIH not allocating any real funds towards CFS (and in light of these developments that they probably knew were coming - that was all the justification they needed) I am not feeling very hopeful.

Research and science - at this juncture - have and continue to fail us

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Research and science done by the government and with the government involved is screwed. Got that message loud and clear. Getting funding for good organizations like the WPI, and others from private funds still works! Just need a Mark Zuckerberg or Sergey Brin and others to kick down some serious cash for research.

Good news is people are waking up fast and information travels.

Compared to where we were 6 months ago, the awareness of what governments intentions truly are has increased exponentially. Nobody is bamboozled anymore by the BS and propanganda. People get it.

You can see it in the anger and frustration coming from patients. It's why everybody is so angry now, they have awakened to the reality we all face. Everybody knows it's a big joke when a negative paper comes out or when Coffin claims to leave XMRV behind after he just found it, but can't prove where it came from. THAT IS HUGE.

I went to a lyme group the other day. They knew exactly what was up. It's no secret anymore.

Cat's out of the bag.

Now we just have to figure out how to network with other sick groups and take our governments back from the special interests, and raise funds for real research.

Cast a big net folks, powers in numbers. Get the word out to all the groups being screwed. We can beat this if all the Lyme, cancer, CFS, autism, etc patients network and compare notes.

Especially now the autism community is on to it. Those are some young folks and it is kids at stake. THAT will get some attention. US CFS'ers may not beat it, but if we can educate the autism, Lyme, and cancer people. We should have some serious horsepower to pull on through to get the real answer out.

Research and science done by the government and with the government involved is screwed. Got that message loud and clear. Getting funding for good organizations like the WPI, and others from private funds still works! Just need a Mark Zuckerberg or Sergey Brin and others to kick down some serious cash for research.

Good news is people are waking up fast and information travels.

Compared to where we were 6 months ago, the awareness of what governments intentions truly are has increased exponentially. Nobody is bamboozled anymore by the BS and propanganda. People get it.

You can see it in the anger and frustration coming from patients. It's why everybody is so angry now, they have awakened to the reality we all face. Everybody knows it's a big joke when a negative paper comes out or when Coffin claims to leave XMRV behind after he just found it, but can't prove where it came from. THAT IS HUGE.

I went to a lyme group the other day. They knew exactly what was up. It's no secret anymore.

Cat's out of the bag.

Now we just have to figure out how to network with other sick groups and take our governments back from the special interests, and raise funds for real research.

Cast a big net folks, powers in numbers. Get the word out to all the groups being screwed. We can beat this if all the Lyme, cancer, CFS, autism, etc patients network and compare notes.

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I agree with you mark.

I think in the US you should go to your congressman with all the politics we know about, and try to get some on your side.

Yes we should link up with other illnesses - they are being politically abused just like us.
Dont asume that kids will be well treated. They dont care about autism. It is so hard to believe, but it really is as brutal and barbaric as that.

Hi Alex. Thanks for the input. Could you explain a bit more what you mean? I see it's a problem to reach people. Once they are members of an association, for example, they can easily be reached. But before that, if they're not reading forums, it might be more difficult. Especially if you live in a country where doctors are not knowledgeable or have strange ideas about ME/CFS. It certainly can be done though, nevertheless.

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Hi eric_s, this is a complex issue that many people have been thinking about, me included.

1. First, confusion. We are told there is nothing wrong with us. No, there is but its psychiatric. No, we don't have CFS, we have somatoform disorder. No, ME and and CFS are the same thing. No, its really physical but caused by dysfunctional psychology. No medical tests show anything so why bother? We need to exercise more - go out and be active: when this results in a crash they then go back to blaming us, or saying its all in our heads. The confusion sown by so many definitions, especially those that cannot differentiate between psychiatric disorders and ME or CFS, only adds to the confusion.

We frequently can't make sense of this mess. We have poor memory and severe brain fog. Thought takes energy too. Then when we go out to get info, so much is wrong. I have not been to the wikipedia in years, but when I was last there on CFS I thought it was mostly garbage. How do you get good information when so much of it is wrong, so much medical opinion is entrenched dogma and ignorance of this topic? When even our authorities fail us, when we can't get good information, it can cause confusion and demoralization.

2. Then there is the social stigma and disapproval. We are treated with hostility by bureaucrats, medical professionals, friends and even family. We are effectively ostracized, much like lepers who were ostracized for the last several millenia. I can understand why a public servant trying to enact laws or regulations would be frustrated by people who do not fit their rigid definitions. I cannot understand emotionally why doctors are so ignorant on this - even though I think I understand it intellectually.

3. We frequently lose our jobs, and cannot afford a computer or internet connection. In addition, many of us lose capacity to read. Given so many of us cannot go out, we are stuck at home, isolated, effectively treated like mushrooms. Our societies are very weak politically, in large part due to our being so very sick. Then we have doctors and public servants telling patients not to join a support group. We are cut off from good information, and fed bad information, and can't get out to interact with other patients or protest in any numbers. This is just as true for the moderately disabled as the severely disabled. If a patient is less sick they are probably trying to hold down a job. As soon as they get home, they most likely crash into bed. When do they find the energy to be involved in ME/CFS societies?

4. So many of us are in poor countries. However it has been pointed out by quite a number of people that the numbers of ME/CFS patients in Europe and North America are quite high.

How do we reach them when most are not on the net? How do we get them to participate when they are too sick to travel? How do we get them motivated when they are confused and demoralized? We have the numbers, but we are too sick to fight in our own defense, and the history so far has shown that only a very few who are not sick will fight for us.

I could probably write like his all day eric, but I suspect you already know all of this.

We need to find ways to reach people not on the net. Anyone net savvy is likely to wind up on one forum or another. The weak point is those who do not use the internet, although I worry about those in the UK and a few other European countries, or who go to wikipedia as the authority.

I wonder if a radio campaign or newspaper add campaign would work? But who would fund it? Would it make a difference? If they are not on the net and can't travel, they are dis-empowered anyway. Maybe a free newsletter to anyone who wants it? Maybe we should be advertising that in newspapers and on radios, at least in a pilot program in a few locations to see if it works? Making free brochures available at doctors offices might also work. Who knows? We need to try everything, and keep trying.

One other possibility has occurred to me. What would happen if a candidate for national senate (any country) were to stand up on a platform of supporting ME/CFS research or treatment? I suspect a candidate who stood for the fair treatment of "medically unexplained illness" would do better though. First of all, they could have as part of their platform that much has been explained about these illnesses, its just being ignored. Such a candidate would not even have to win to make a difference, though it would be better if they could. If such a candidate stood for all such illnesses, from IBS to fibro and MCS, what percentage of the population would back them? Would 5% of the voting public be enough for them to get office? I suspect that will vary country by country, and region by region.

So who would be a candidate? We need someone who is not sick, as they may have to fulfill the duties of their office, and if they get elected they will have a lot of advocacy to do - so a parent or sibling of a person with one of these illnesses would be necessary.

Thanks a lot, Alex. I just got up after rerturning from Munich and need some time to digest so much information. But it's very interesting. I am aware of some of these problems and already have some ideas how to fix some of them. It's not easy, no doubt about that, but we will find a way. Technology certainly is very important. You know, just the other day i said to someone i will get in the car and drive home to those people who are too sick to attend meetings. We must get the people into the structures. Show them we can do something and if they support us, we will all win. Switzerland is not a very large country, luckily. That's the first time i'm glad about this ;-) I'm not too well, but i can do this, if necessary, and i will do it. We must also bring the meetings home to people through Skype or similar technologies. I know not everybody can afford a computer, but i think in western Europe most can or they have family or friends who have one. Certainly, as far as those who have one are concerned, it's the most important tool. I will reply later.